Post Marathon + Vacation

Caroline ran the marathon, and I couldn’t be more proud. She is continuously blogging about it on her site, so please go visit & see how the marathon felt for the runner.

For the viewer, at home… It felt terrifying, and exciting, and wonderful all at once. I sat using my iPhone app, constantly hitting refresh. I watched where she was on the map TRYING to not feel guilty about being in Virginia while she was in NYC for me. It’s like, in some ways, we are connected. I watched how fast she ran, when she passed certain landmarks and I cheered, crying a lot, as she crossed the finish line. My best friend had done it. She has run one of the most prestigious marathons in the world, and she did it without accident or injury. She is an amazing woman.

After the marathon, Caroline and her boyfriend Adam, came to my town to visit and see what there is to be seen. My car, for the first time in over 6 months, got some exercise. After a couple of days in my town, mostly eating with very little site seeing, we went to DC to see the big city.

Anyone who knows me, and has gone site seeing with me in one of the “big cities” that I’ve lived in, or spent time in, knows that I can show you a city in less than 2 days, if necessary. DC was no exception. We didn’t hit any museums as to be honest that would have been impossible, but we did hit the monuments and I did give a brief history lesson (as best I could) at each of them. I was a walking encyclopedia and I was loving it.

After wandering up and down the Mall, we went to the National Air & Space Museum to catch a quick bite at the McDonalds and so they could wander around some more. At this point I was not feeling myself. My thoughts kept fluttering around to other places, and honestly I felt like I was in another world myself. As we wandered, I felt worse and worse. It got to the point I finally told Caroline to go find Adam and I’d wander the gift shop. I neither wanted to cause alarm, nor ruin their experience. Caroline, after what felt like days, came back with Adam and mentioned something and I know I said I needed to go back to the hotel. They were ready to walk, and I said I’d take a cab. At this point, I had lost everything. I was no longer able to keep my brain together.

To be perfectly honest, I don’t know how it all worked out. I don’t know if I TOLD Adam and Caroline to walk and enjoy themselves, or if they sent me on my way. I don’t even remember getting in the cab & giving directions. I don’t remember paying for the cab, I don’t remember getting to the hotel room. I remember nothing until an hour or so later when Caroline came back in. I was sound asleep, face down on the bed and I heard movement in the room. I felt like the life had been sucked out of me and there was nothing left but to sleep what was left of my life in that bed. A short time later I said to Caroline that I couldn’t move my legs. I’ve had this happen before, lovely atonic seizures in my legs. I’ve fallen down stairs, fallen out of bed, fallen goodness knows where else, but in my adult life it has never actually happened with someone else right there.

Caroline comes over and starts prodding at them, picking them up and dropping them. I think she felt to some degree I was joking around after all of the walking we had done. At this point I had started crying. This seizure is the scariest of my seizures anymore. It’s like being a paraplegic but knowing that’s all wrong. That your legs are there and you SHOULD be able to move. Knowing what should  happen, and yet having the opposite happen is a terrible thing.

I have trouble connecting the dots for that evening. My memory is sketchy at best. A bit like going out on a bender and things being remembered only AFTER someone tells you about it. If only I really did have a bender, at least I’d be able to explain it easily.

Now, however, the vacation is over. The holidays are beginning and off we go to another adventure.

Advertisements

Exciting!!

I’m so excited. My best friend is going to be here shortly. I have prepared lasagna for dinner (which will be a late dinner, definitely), I have cleaned… ish… my house. I even managed to get my car inspected so Caroline and Adam will be able to go where they please, when they please (the tags expired in August. Whoops). I have made plans.

The thing is, no matter how many plans you make, how excited you get as someone with epilepsy your life is completely unpredictable. As of this second I’m fine. In 20 minutes my life could flip upside-down and my excitement may turn to fear that I’ve ruined my best friend’s holiday as I’ll be too tired to move.

I don’t think its fair that this is how I have to think. I don’t think its fair that I have to depend on others to get the basics in my life accomplished. It isn’t.  I try to stay positive, I try to not worry about the simple things. My best friend will be my best friend regardless of how our time together goes. She’ll understand, she always has, not just about my seizures, but about me as a friend.

 

The Vagus Nerve Stimulator

The first Monday of every month, I go to a support group. This support group has only happened twice, but last night we had two speakers, one was the sales person/nurse for the VNS manufacturer, and the other was a local epileptologist. I had NO idea we had one in the area, last I looked there weren’t any. We talked a bit about what was going on in our lives, and then the VNS speaker stood before us and presented. She handed us VNS implants to hold, to look at. I, personally, am unlikely to get one of these devices. I’m a bit of a VNS-a-phobe if there is such a thing. But to hold a device that could change someone’s life in your hands? It’s a bit like holding the red button to start a nuclear war.

This little device is a little over the size of a quarter with one big wire coming out of it. As I rolled it around in my hands and looked at the electrodes that wrap around the Vagus nerve, I thought to myself If I knew this could change everything tomorrow, I’d be in the operating room now. The problem is, I’ve heard some horror stories about the VNS, and even after hearing the success stories it’s hard to get those tear jerking memories out of my head.

The VNS is now being used to treat depression (although no insurance company will pay for it, despite the limited side affects and how well it works). It’s come a long way since it was the size of what felt like a dinner plate.

I guess my point is, treatment is evolving, changing. I want to be someone who helps people get better. I want to be someone who changes at least one person’s world.

Please remember to donate. The race is on Sunday and we need to get closer to our goal! Even if it’s $1, please donate!

http://bit.ly/eresearch

The Bad Days.

Some days are good, some days are bad. The good days are wonderful. You get to enjoy time with your friends, smile, laugh and know that it’ll be OK. The bad days you really feel the urge to just sleep the world away, and you pray that maybe tomorrow will be a good day.

Yesterday, well yesterday was a bad day. I had gotten home, and then… Well I don’t remember a lot of the evening. I ate, and then the seizures started rolling in. I said something on Twitter about it. My mom says she called. I slept. I slept a lot. 11pm rolls around and I decide to make my way up to bed. My legs were wobbly, I was wandering around like a staggering drunk.

To be honest, at some point I should have gone to the ER. I should have let them look at me. Make sure I wasn’t going brain dead or something stupid. Only problem with that is, they don’t know what to do with me. I can’t take Ativan anymore, their weapon of choice… So what? They stare at me while I feel miserable, and I feel even more miserable because I’m in an ER with blood taken and needles everywhere.

Knowing there’s nothing that they can do. Knowing that the best they can offer is next to nothing. That’s a kind of nightmare no one deserves. I mean, most people when they get sick they can go to a doctor, be given a pill and go home. They may not feel better immediately, but a few days they could. Even cancer patients have treatments. But there’s not much they can do with me. Not much other than use me as a pin cushion.

Today, I should stay in bed. I should watch some Netflix & sleep. But I refuse to give up my day because yesterday was a bad day. I refuse to let that happen. Today could be a good day, if I give it a chance.

Management

When you have a disease, a disorder, or really any malady, it’s all about management. Everything has to be managed. Your life goes from as care free as an adult human life can be, to the exact opposite.

As I was counting out pills this morning, trying to figure out exactly when I needed to fork out the money and call Canada again to set up my next order, I realized my life was managed down to the day. Pills had to be taken at certain times, I had to be in bed by 11 or my body clock would go crazy, everything was managed. I was like a fine tuned business without the joy of the income.

It’s nearing the time of year I love, and hate. This time of year is the time of long weekends, friends, parties, wine, champagne, and a multitude of other sins. Sleep schedules go wonky, diets go out the window… This is the time we forgive ourselves for not being managed. We forgive ourselves for letting our hair down and running wild and free. I used to love this time of year. Staying up until I saw the first dawn of the New Year used to be one of my favorite things. (Cover your eyes mom) drinking with my friends and just enjoying life, being a twenty-something.

To an extent, that’s no more. Obviously alcohol isn’t needed to make a party fun. You don’t need alcohol to be in good spirits, but it’s part of the season. Upset sleep schedules and letting emotions run whichever way you want and feel like… That’s something I can’t do anymore, not really. Alcohol is a definite no-no in my world. Between the benzos and the other medications I’m on, alcohol could be a death sentence. Upset sleep schedules increases my risk of seizures… Emotions running up and down increase all of those lovely stress hormones that can increase the likelihood of seizures… Basically the holidays can be a shark infested ocean for those of us that have to be managed.

Holidays are still my favorite time. I love family, I love friends, I love presents and food and pretty much everything the upcoming months stand for (including costumes!!) but they’re also some of the hardest times. Every time you go against the managed plan, it’s like going the wrong way down a one way street. You just pray you’re lucky and it isn’t this time.

I’ll never forget the first time I realized this. It wasn’t a holiday, but I was out with my friends in the town I grew up in. It was late, and we were out to see a punk band that has long since broken up and gone who knows where with their lives. I had been up late several nights running, I had a lot of caffeine in my system and the lights and the sound were bringing on simple partials like crazy. My friend Jim went outside with me and sat until they slowed down. It was cold, his jacket was wrapped around me. The sky was pitch black and people were milling around outside for who knows what reason. It was then I realized regardless of what I wanted to think and believe I’d never be like everyone else in the venue. No matter how hard I tried I’d be on the outside.  When I finally stabilized to the point of what a 16/17 year old would feel as good to go, the show was over. Everyone came out of the venue and I wasn’t on the outside anymore.

People call me a control freak. Some say I don’t go out enough, I need to do more things and stay out later. Every time I think of that, I think of that one time I spent my night outside a venue trying my best not to freak out with Jim right there. I never want to feel like I’m on the outside, so I manage my life around it. I keep myself safe and secure so when I do go out, I’m able to be on the inside. To listen to the music, to open presents, to be a part of something other than this managed place I live in.

Gelastic Seizures

At one point during my stay for video EEG monitoring (AKA 2 weeks in hell), my doctors had mentioned something about a different kind of seizure that I could possibly have… At the time, I was sleep deprived and half insane from being chained to a wall and having to pee with a nurse outside the door (you think I’m kidding. I’m not). I honestly thought they said something like crystal meth seizures and well, Google brought me nothing. I had searched and searched and searched and found… Nill with crystalaticseizures, crystal meth seizures. Yeah, there’s nothing.

Until recently I had somewhat forgotten about the crystal meth seizures because I thought it could have been a day dream, or a dream induced by the hottest doctor since Grey’s Anatomy. I had come across (during my OMG so bored Google searches) Gelastic Seizures. Then, it was mentioned to me by my doctor. Kind of in passing in a “what do you think?” sort of way.

What are Gelastic seizures? They have nothing to do with Jello, Jelly, Jam, or pretty much anything interesting. According to the NIH article here

Gelastic seizures are epileptic events characterized by bouts of laughter. Laughter-like vocalization is usually combined with facial contraction in the form of a smile. Autonomic features such as flushing, tachycardia, and altered respiration are widely recognized

Funny story, that sounds a lot like me. I laugh when I shouldn’t, I cry for no reason (especially after seizures/during seizures/before seizures). It’d be interesting if this was actually part of what’s wrong with me, but at the same time… Not good at all. There’s no treatment. Meds, which I’m already on, and thats about it. Surgery isn’t really an option as the part of the brain they originate from isn’t really operable. So we’ll see. It’s rare (especially in women), and it’s highly unlikely. But education never hurt anyone.

Tea Leaves

This morning as I was doing my early morning surfing and preparing myself for the day, I took a drink of my tea. I’m drinking that green herbal stuff that doesn’t come in little baggies so you get stuck having to actually… see the tea leaves. As I looked in the bottom of my cup I saw the few leaves that escaped as they swirled around.

If I were a different person, I may look at those tea leaves and try to figure out what they mean. Maybe they mean I’m going to have a happy, healthy life. Maybe they mean my true love is about to come. Or maybe they just mean I need a better tea thing-a-majiggy.

The fact is, my future is uncertain. I may remain forever as I am now. I may always have seizures waking me up in the morning, bothering me at work, making it so independence becomes harder and harder. OR I may become seizure free. Maybe we’ll find the perfect combination of drugs that “cures” me. MAYBE just maybe I’ll be able to have a temporal lobectomy and stop having seizures that way. Maybe I’ll cave and get a VNS (for me it’s my worst nightmare, for others it’s been a dream come true).

I just want some certainty in my life. I’d like to know that tomorrow I won’t have any seizures. Tomorrow I’ll be able to get in my car and take myself to the store and get a big thing of toilet paper without having to worry how I’m going to get it on my bike, or WORSE take it on the bus. I just want some certainty that tomorrow will be easier.

The tea leaves are now down the sink, never to be seen again. That’s probably a good thing. No good news ever comes from tea leaves anyway.

  • Meg
  • Reid B. Kimball

Archives

%d bloggers like this: